Oxford Health NHS Foundation Trust

Families affected by autism called on to take part in research

Researchers at Oxford Health NHS Foundation Trust (OHFT) are calling on local families affected by autism to take part in research that could lead to better services for people affected by the condition.

The call comes ahead of Autism Awareness Week launching on 2 April.

It’s estimated that about one in every 100 people in the UK has Autism Spectrum Disorder (ASD). People with ASD tend to have problems with social interaction and communication.

Very little research has been undertaken into the life experiences of adults and older people on the autism spectrum. The national Adult Autism Spectrum Cohort-UK study is being run by the autism research team at Newcastle University (led by Dr Jeremy Parr) and is actively involving researchers and families at OHFT, who are looking for local people to take part.

It is funded by national autism research charity Autistica and is supported by the NIHR Clinical Research Network: Thames Valley and South Midlands, the local research delivery arm of the NHS. The National Autistic Society is a research partner.

Researchers are hoping the study will lead to improvements in the services offered to people who are affected by autism, and the research findings will be shared with voluntary sector organisations and government.

People who take part in the study will be asked to fill in a consent form and a questionnaire which will ask questions about their autism spectrum diagnosis and other information – like the types of support they receive, their employment opportunities, home, and information about aspects of their daily lives. Researchers will then contact them from time to time to ask them for further information about their life. Participants will be kept informed about the study’s progress, and interesting findings, through newsletters and the website www.autismspectrum-uk.com

Consultant Clinical Psychologist, Gillian Nightall, who has worked in an adult diagnostic ASD clinic for OHFT, said: “This is a very ambitious research project and has the potential to transform the lives of people affected by autism. The number of people taking part in research locally is growing and I would encourage anyone who would like to find out more to visit the study website, ring the research team or speak to their doctor or nurse.”

Dr James Cusack, Research Director, Autistica, said: “Most people with autism are adults, yet we know very little about how autism changes throughout adulthood, or the personal, physical and mental health needs of adults with autism. As the first children to be diagnosed reach middle age, it is more urgent than ever that adults get involved in research so that we can learn how to best support people with autism throughout their lifespan.”

Families who are interested in taking part in the study can join up online at www.autismspectrum-uk.com, or can ring the research team at Oxford Health NHS Foundation Trust on (01865) 902013 during office hours.